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Just a short history rehearsel first: was checked for ccsvi in Katowice late March where both jugular veins turned out to be almost non existent. Zero flow in the far too narrow jugs.

Righthand jug could be opened up but collapsed almost immediately so was stented with a 10 X 1 cm Medtronic stent. Left jug could not be approached from inside so an attempt as made to get in through the outside of my neck. A small cut was made to get acces. Pretty painfull but just bearable. They had to stop this action after 2 hours in the ops theater because of excessive bleeding.

So went home with the advice to return for another attempt in 2 month time. I was prescribed Fraxiparine 0,6 ml once a day for 7 days, Clopidogrel 0,075 daily for a year and life long Aspirin.

Positive experiences were the "usual" improved blood flow in hands and feet, no more blue toes. Legs much less spastic and much less pain from the "MS hug" which was a big releave.

A while later it turned out that a hospital nearer my home was starting ccsvi treatment so I decided to see if they might be able to open the left jug which seemed more attractive then another journey to Poland.

By the time I had my appoiment there my spasm and pain were back just as my cold hands etc. Dr Roel Beelen quickly established that the stent in my right jug had no flow at all. It was just filled with clotted blood......

I am now happy to report that 2 days ago the stent was succesfully opened up. It turned out to be quite a job which needed more time and tools then estimated. The loosened debri was sucked away on the spot.

After the stent was opened up and the flow restored he had a succesfull go at my left jugular. Now have a flow of 200 ( 200 what ? ) on both sides.

There wil be a close follow up as he will see me by the end of the month. Medication for the time being: Fraxiparine 6 ml twice a day.

I will keep you posted.

Please do. Thanks for the update, sounds good so far. Good luck! The Fraxipine is an anti-clotting agent per my astute google search, fyi for everyone else. Interesting it is indicated for DVT in the legs. Legs, neck, all veins right?

The IR who did my first liberation procedure talked to me about the many types and designs of stents. I was surprised to find out that he had already had used them in other areas of the body (like legs) but not in the neck yet. I was only his second CCSVI patient at the time.

As I think about it now, he did mention that he preferred a stent design that was re-stretchable (for lack of the proper terminology) so that if it re-clogged it could be ballooned open. This is different from a design, once set, isn't elastic.

I am now happy to report that 2 days ago the stent was succesfully opened up. It turned out to be quite a job which needed more time and tools then estimated. The loosened debri was sucked away on the spot.

After the stent was opened up and the flow restored he had a succesfull go at my left jugular. Now have a flow of 200 ( 200 what ? ) on both sides.

There wil be a close follow up as he will see me by the end of the month. Medication for the time being: Fraxiparine 6 ml twice a day.

I will keep you posted.

Hi - I have 3 stents - all linked- in my LIJV. About 6 weeks ago, there was no flow (started getting more MS symtoms about 8 weeks aga so went for a doppler). Apparently, the stents are all clotted. Have been on anticoagulants since th ezstents were put in, but for the last 2 weeks I have been on Heparin. The doctors in th eUS and in Canada say it is too risky to try to remove the clot, and that I have to leave with th eclotted stents. Problem is that 1)I am in a lot of pain and 2) my MS symptoms are worse. Bas, Do you know the name of the procedure they for you to suck the clot out? how long after you clotted did they perform the intervention?

stent was unblocked after approx 2 month after the symptoms re appeared
Dr just worked his way through it with some tool but all debri was sucked away instantly with some sort of vacuum cleaner through my groin
took about one hour for the one stent of 10 cm long

MSLiberation, I have heard here that a clot can be come permanent after three months. You began re-experiencing symptoms two months ago? What reason have the doctors given for not attempting treatment? I fear they are undervaluing the jugular vein. The risk might be the chance of a clot breaking away and lodging in the lungs. Also it must be a difficult procedure to clear it out. How many doctors have you consulted? I know it might be risky to keep trolling for doctors until you find one who is agreeable but it is also risky to live with the loss of the vein. PM me, ok?

Hello everyone
bas
sorry to hear of the problems with your stent , my hubby was treated in poland and also has clots
One in the stent and one above the stent.
He took all the meds he was told to take and did so well for 9 weeks.
We learned to day that he should not eat black Liquorice while taking any blood thing meds, this we did not know!!!!
How much this played a role in his blood clots we do not know, and are now not sure what to do as canada will not treat him or give him the desolving meds to take care of this, so he is now on warafin and lovenex and with luck that will help.
We wish you the best and you are not the only one in this crapy state...Sindy

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